Cancerversary Time

Today is my "cancerversary". It has been three years since my diagnosis. It's kind of ironic that CML awareness day is the same day I was diagnosed. I have to admit in this situation I'm in right now, it feels like the glass is half full. On the one hand I've survived three years. On the other hand, quality of life is not that great.

Original Art by Elizabeth Munroz

So here's an update. My fatigue was debilitating enough to make me beg my doctor to take me off my Sprycel. Since my diagnosis I began taking 100mg daily. I got PCR-U within 4 months (no sign of disease) and it has continued to remain in remission.

But, I have lost a quarter of my body weight due to ongoing nausea. My hair started to turn white (I now dye it). My skin is so dry it's a constant battle to keep the sores from getting infected. I wake up with headaches, and I have throbbing in my head and neck most of the time. I try to just ignore it, but sometimes it gets very distracting. Okay, I told myself, I gotta live with this. It's the only way. 

But 18 months ago, I began to have fatigue and it increased exponentially so that in the last month or so, I had to lie down every few minutes because I was so exhausted. You can't even imagine what it's been like to have to go somewhere in the car. Upon arriving anywhere, I would have to literally back up and lean against a wall, just to have it hold me up.

When I lost my cat, I didn't have the energy/strength to call it to come home, or to walk the neighborhood to search for it. That was very stressful. Thankfully, my cat came home nine days later. More stress because he needed vet care. It was very difficult for me to physically handle. My cats mean a great deal to me.

My oncologist was either inexperienced with Sprycel or just plain ignorant. When I told her about this side effect she emphatically said it wasn't related at all. But, I spoke to a pharmacist associated with Bristol Myers Squibb, the company that manufactures Sprycel. He told me that at least 25 percent of all patients taking Sprycel, have fatigue as a side effect. And that is considered significant, therefore a major side effect. I really lost my respect for my oncologist and immediately found another.

I'm aware there are patients who go without treatment after being in remission, so I discussed it with this new oncologist. After lowering my dosage to 80 mg. for a couple months, she agreed I can take a little vacation from Sprycel and see what happens to the fatigue. In the meantime, I will have regular testing close together.

I have been off a little over a week. Guess what, I drove myself 90 miles to visit family, attended a performance, stayed overnight, went out for breakfast and drove 90 miles back home the next day. Two days later, I drove 60 miles and spent the day at a hospital waiting for a loved one to come out of surgery. You know what that can be like.

Just a few weeks ago I wouldn't have been able to do that at all. I am aware that dying is a possibility if my CML cannot be controlled. But, living with a quality of life that feels like death while taking Sprycel... well... It's hard for me to accept that the rest of my life should have to drag out many years in that condition. Would it be worth it?

Coming Out of the Closet

Saw my oncologist yesterday for a regular follow up appt. Everything is "normal" (she says) but I dont feel well. She thinks it has nothing to do with CML or Sprycel. During the appointment I asked her a question to which the answer scared me.

There's a well known man, Actor, Ralph Peduto, in my area who died 12 days after diagnosis. TWELVE DAYS! 

I asked my doctor how that could be. Didn't he have any symptoms? Was he seeing a doctor who just missed the signs? Or, was treating him for something else? How does one's bone marrow go so crazy in just a few days that one can suddenly just out and out die?

She was sort of nonchalant about it. She said, "Oh, yes... that can happen. A patient can go along fine and then, for reasons we don't know, things can get quickly out of hand like that."

Until then I felt like my diagnosis was unreal, and no big deal. (denial?) Now, I'm worried. It's like having a bad guy hiding in your closet that you know is there, but who promises to never come out, but you can't trust him and can't do anything about him.

Ralph Peduto's Filmography

Gratitude for Two Years of Living

It's been two years since I was told I have leukemia... specifically the Chronic Myelogenous type. If I had been diagnosed with CML before Gleevec came into existence (about twelve years ago) my average life expectancy while living with and being treated by the methods used for CML would have been about six years.

It's been so effective that people are living much longer than six years. And, in fact, dying of other conditions. Because CML usually affects older people, one could die of heart disease or stroke, for example. But, I wonder... what about those who are diagnosed younger? Do they get to go on another forty or fifty years without the leukemia taking over? Will the medication continue to work for that amount of time? I guess that remains to be seen.

 To clarify matters, I am not taking Gleevec for my CML. I am taking Sprycel, otherwise known as Dasatinib, which is sort of like the grandchild of Gleevec. In other words, more advanced.

I'm a little bit confused about when Dasatinib was approved for CML as the first drug to be issued to a newly diagnosed CML patient. I find evidence that it was approved only under certain circumstances, such as for a patient who has already tried Gleevec and another related drug called Tasigna.

Within a couple months of starting Sprycel, my leukemia was in remission and so far has stayed that way. Now, that might make it seem like I no longer have leukemia, but that is not exactly the case. It's sort of like saying that a person with a diagnosis of diabetes who has great control of it is in remission, but not cured. Do you see what I mean? So, today I contemplate the fact that I have been given the gift of life for this last two years. Thank you to the scientists who did diligent research in order to create Sprycel. And a great THANK YOU to all those who funded that research!

I've included these pictures of my cat, Chica who, ironically, died of Feline Leukemia last Tuesday. I wonder if she had been given Sprycel, would she have survived?

Vanity... Vanity... All is Vanity

Watching Diane Sawyer on the news tonight, it struck me how well she has aged. Granted, she might have had a little "help". But, she still wears her make-up well. It seems to me that older women, no matter how many nips and tucks or surgical interventions they might have, make-up is a tell tale problem. Even millionaires, no matter how well done the make up, still cannot hide the years.

Oh, I know this sounds petty. Yes, it is. I suppose. But the idea of lost beauty and aging has hit me very hard especially this last few years. I never thought it would be possible I would react this way. I had the attitude I would grow old gracefully and accept the changes as they came. But, that's not what has happened. I've learned I am not without vanity.

2003 at age 58

Since the leukemia diagnosis, my appearance has changed drastically. My skin has dried and my face has wrinkled. Shall I blame the leukemia for the changes? Can I say it is the fault of the chemo drug I'm taking? Could it simply be old age suddenly taking over my body?

The chemo drug definitely affected my skin. Within a few days of beginning it, I got a bumpy rash. My skin suddenly felt like sandpaper. With the help of my dermatologist, I've been able to have a little control over it.

Though the bumpiness is tolerable I shall miss it's previous softness. Like a child's comfort blanket, it has disappeared. Not only that, my skin has gotten very dry.... very, very dry. That most certainly has an aging effect.

Because of the chemo, I've lost a considerable amount of weight. That's a good thing, though. I needed it. However, losing weight, especially as fast as I lost it, causes disappointing results in appearance, too. Where the face was once plump and sassy, it is now sallow and saggy. The body has lost a lot of muscle mass, too. 'Nuff said about that!

2012 at age 67

It's been a bit of an identity crisis for me. I was used to being considered young looking, and still pretty into my late 50's. Received compliments and sometimes even a head turned in my direction with a "come hither" look from men younger than I. Admittedly it was flattering. I didn't know how much it fed my ego. Nor, how I would miss it.

Suddenly, I look in the mirror and I don't know that old woman. It's a shock.

I know I will eventually become familiar with my new appearance, if I will just look in the mirror every day and acknowledge that the face I see is mine.

I think about how frivolous this all is! What am I complaining about?

I am so thankful I was not diagnosed with leukemia before these new tyrosine-kinase inhibitor chemo drugs were created. The first one, Gleevec was approved for use in 2001. Before that, the average length of time someone survived with Chronic Myelogenous Leukemia was about six years. The one I'm taking, Dasatinib, is 325-fold more potent for attacking the CML. My survival is pretty much assured. I should live out my life until I die of something else.

Well, it is what it is. An older woman, a senior citizen... me, complaining of lost beauty and confused about identity. Yet, I'm alive and doing better than I was two years ago when I was in so much bone pain and having night sweats with my blood counts sky high and bone marrow not working right. And still, there is a part of me, a part deep inside, the one that knows without a doubt that I'm really twenty-something. At least it always feels that way.

I remember when my mother was in her eighties and in a nursing home. She complained about the old ladies at the lunch table. Astounded, I blurted out, "Mom! YOU are an old lady!"

We laughed.

Now it's my turn.


“When you are five, you know your age down to the month. Even in your twenties, you know how old you are. I'm twenty-three you say, or maybe twenty-seven. But then in your thirties, something strange starts to happen. It is a mere hiccup at first, an instant of hesitation. How old are you? Oh, I'm--you start confidently, but then you stop. You were going to say thirty-three, but you are not. You're thirty-five. And then you're bothered, because you wonder if this is the beginning of the end. It is, of course, but it's decades before you admit it.” 
― Sara Gruen, Water for Elephants

It's Only Fat!

Test:	CT Chest Abdomen Pelvis With Contrast
Resulted Date:	9/19/2012	Status:	Final Result

REASON FOR EXAM: Left flank mass, history of CML and right pelvic chondrosarcoma
After the administration of intravenous and oral contrast, spiral CT of the
chest, abdomen and pelvis was performed. Delayed images of the abdomen and
pelvis were also obtained. Axial plane images are reviewed in soft tissue, lung
and bone windows on computer workstation.  100 cc Isovue-370
Dose parameters for this examination:
number of series: 2
maximal CTDI 14.3 mGy
total DLP 1606.9 mGy-cm.
COMPARISON: 10/05/2011
FINDINGS: A skin marker was placed over the mass on the left flank. The mass
corresponds to a 4.2 x 3.9 x 9.6 cm fat density mass with a thin smooth
capsule. The lumen of the mass is homogeneous fat density. No enhancing
component is present. Similar mass was present on the previous study dated
10/05/2011.
Thoracic inlet is normal. No axillary lymphadenopathy.
Mediastinal structures are normal. Densely calcified mass in the right lower
lobe is stable. The lungs are otherwise clear. No infiltrate or pleural
effusion.
Air in the left hepatic duct is again noted. There is a small amount of air in
the common bile duct. Gallbladder is surgically absent. The pancreas, spleen,
adrenal glands and abdominal aorta are unremarkable. Vascular calcifications
are noted.
Small intestine and colon are within normal limits.
Previously identified surgical changes on the right side of the pelvis are
again noted. The right pubis and most of the right ischium have been removed
degenerative changes in the SI joints and lower lumbar spine are noted. No
lymphadenopathy. No inflammation or ascites.  Impression:   1. The left flank mass is most consistent with extra muscular lipoma.  2. Surgical changes in the pelvis  3. Old granulomatous disease

Coughing up a Lung?

I've been sick since Christmas time, presumably a cold or flu. It has hung on and hung on. Mostly it is the coughing that never lets up. This is the kind of coughing that is dry, doesn't produce the relief of mucus. It is the type of cough that squeezes the bronchi and it takes a great deal of concentration to not give into that squeezing.

Moving about or talking increases the frequency and intensity of the coughing.

I used every possible over the counter and complementary method I could think of to help get some control of the coughing and give my body some rest. Attempts were futile.

The cough was so intense my head throbbed and my rib cage objected to the constant wracking (hacking?). I could even feel sharp pain in my lower spine when my cough was repeating itself without respite. Yes, yes.. this is what coughing up a lung feels like!

Since I am mildly asthmatic, I am aware of when my breathing is compromised and it certainly was getting that way. Therefore I went to Urgent Care and received a nebulizer treatment. I have my own nebulizer at home but was out of the medicine to put in it. Also, I received a prescription for the medicine (albuterol) and another for Prednisone pills. They helped considerably. But, now the prednisone has run out and the coughing has returned full force.

Two days later I saw my oncologist who ordered a chest xray, just in case there was something going on. I went to have my xray. The technician seemed a bit sullen but I figured perhaps she had a bad day. When I asked to look at my xrays, she let me look at them. This seems to be pretty common these days, at least here in California. In years past I have often been refused that option or told I wouldn't know what I would see, or I was not qualified to look at my own xrays.

I'm not a radiologist. Though I took medical courses in the past with the goal of radiology I never finished my education. I cannot officially read an xray, but I have seen enough of my own that I can at least recognize when something appears to be different from the others that have previously been taken.

I was not surprised to notice a nodule in the lower lobe of my right lung. It has been there quite some time. (long story about that. I'll write about it some other time)

Therefore I was very annoyed to read the final report as read by the radiologist not noting a nodule in my lung, but identifying it as a "nipple".

Thoughts on My CBC Blood Test Results

I am frustrated.

I have fluctuating feelings about how I am being treated by the doctor. I wonder if I am being hypercritical in my assessment of my relationship with him. I have been trying to put it all into words, cohesive and clear. But my flaky thought processes get in the way. I'm not down on myself when I say flaky. It is what it is... perhaps distracted might be the better description.

Needless to say on my recent visit, I walked away feeling dissatisfied.

Doctor did not release the blood result records to me until after the visit. When he brought them up on his computer he barely showed them to me. I told him I wanted a copy. He went and got a paper copy and waved it in front of my face declaring that my blood results were "normal". While doing so, he acted all happy and excited. I only saw a flash of the paper and didn't get the chance to examine it. But, I did see those warning red marks indicating somethings were not normal.

In the meantime, he says, "I thought you would be more excited about this. Jumping up and down for joy. I'm very happy about this. Why aren't you?"

I told him, "I feel numb. It doesn't seem real to me. Maybe I have been in denial since the beginning. Since my results were so low in the first place, this doesn't seem like a major thing. Plus, there are so many patients who have CML much worse than me. I'm a member of a CML support group and when people are writing back and forth sharing their challenges. Also, I read articles from PubMed and I see the challenging results of others. I feel like a baby if I complain."

I would have said more but he cut me off. "You shouldn't pay attention to what you read in blogs on the internet"

I felt like laughing that he didn't know the difference between a support group and a blog. But, didn't bother to explain it to him. What I did say is, "The PubMed articles I read are from a reputable source, the National Institute of Health Library. These are peer reviewed legitimate articles I am reading."

Getting back to the CBC results. I fail to see how they are considered normal. Granted some of the numbers are very close to normal. But, some are not. And what does that mean in terms of recovery? In particular Lymphocyte result is still less than half of the low normal.

When I asked the doctor why that was so, and what it meant, he said he didn't know. He's a Hemetologist, a blood oncologist. Shouldn't he know?

~~~~~~~~~~~~~
I took the photograph of a part of downtown Santa Cruz, CA at the beginning of Pacific Ave and Front St.

I Have So Much to Learn!

Low BCR-ABL expression levels in hematopoietic precursor cells enable persistence of chronic myeloid leukemia under imatinib

1. Ashu Kumari1, 
2. Cornelia Brendel1, 
3. Andreas Hochhaus2,
4. Andreas Neubauer1, and 
5. Andreas Burchert1,*

+Author Affiliations

1. ¹ Philipps Universitaet Marburg, Universitaetsklinikum Giessen und Marburg, Klinik fuer Haematologie, Onkologie und Immunologie, Marburg, Germany;
2. ² Universitaetsklinikum Jena, Klinik fuer Innere Medizin II, Abt. Haematologie/Onkologie, Jena, Germany

1. ↵* Corresponding author; email: burchert@staff.uni-marburg.de

Abstract

BCR-ABL overexpression and stem cell quiescence supposedly contribute to the failure of imatinib mesylate (IM) to eradicate chronic myeloid leukemia (CML). 

However, BCR-ABL expression levels of persisting precursors and the impact of long-term IM therapy on the clearance of CML from primitive and mature bone marrow compartments are unclear. 

Here, we have shown, that the number of BCR-ABL positive precursors decreases significantly in all bone marrow compartments during major molecular remission (MMR). 

More importantly, we were able to demonstrate substantially lower BCR-ABL expression levels in persisting MMR colony forming units (CFU) compared to CML CFU from diagnosis. 

Critically, lower BCR-ABL levels may indeed cause IM insensitivity, since primary murine bone marrow cells engineered to express low amounts of BCR-ABL were substantially less sensitive to IM than BCR-ABL overexpressing cells. 

BCR-ABL overexpression in turn catalyzed the de novo development of point mutations to a greater extend than chemical mutagenesis. 

Thus, MMR is characterized by the persistence of CML clones with low BCR-ABL expression, which may explain their insensitivity to IM and their low propensity to develop IM resistance through kinase point mutations. 

These findings may have implications for future treatment strategies of residual disease in CML.

~~~~~~~~~~~~~~~

See original here:

Leukemia Types and SubTypes

I keep finding some references that suggest Leukemias are a type of sarcoma. I had come across that same information a few years ago when I was researching how many types of sarcoma there are. (about fifty some) But, I didn't give it much consideration. Sarcomas are one of the rare cancers. Only about one percent of all adult cancers diagnosed are sarcomas.

Whether all Leukemias are forms of sarcoma, I am unable to determine. And that brings up a point I wish to make. In my ignorance, I always thought that Leukemia was one disease. I was mistaken. There are different types of Leukemia.

According to wikipedia are a "total of four main categories. Within each of these four main categories, there are typically several subcategories. Finally, some rarer types are usually considered to be outside of this classification scheme."

Acute lymphoblastic
Chronic lymphocytic
Acute myelogenous
Chronic myelogenous
Hairy cell
T-cell prolymphocytic
Juvenile myelomonocytic
Large granular lymphocytic
Adult T-cell leukemia

I counted nine subtypes.

The type I have, Chronic Myelogenous Leukemia (CML) has a five year survival rate of 90%. Pretty good odds. Huh? If I last 5 years, I will be 71. I figure by that time, there will be new drugs to treat CML. Hopefully, they will be more effective with less side effects. Best yet would be a cure! Perhaps if that's the case my longevity genes will carry me into my 90's or hundred's as have been the case with my ancestors and other close kin.

Another fallacy I once believed about Leukemia (in general) was that it was a cancer of red blood cells that caused fatal anemia. I have learned that is not the crux of it.

The reason CML has myelogenous in the name is become a source of the blood disturbance that is part of the diagnoses begins with the blood cells called myelocytes, which are very immature cells produced in the bone marrow. They are not supposed to be in the blood stream. Once they get into the blood stream they crowd out the healthy blood cells and that's the problem.

I find it very difficult to explain at this time, because I am still learning. I wish I had paid more attention in college when I took pre-med courses. (I never completed my dream to work in the field of radiology as I then had recurrences of Chondrosarcoma to deal with!)

~~~~~~~~~~~~~~~~~~

Photo art by me, Elizabeth Munroz

Best Friends Forever

As I mentioned on facebook, my best friend for the rest of my life has arrived. (earlier than expected) But, I'm not taking her on my trip to Yosemite! I'll wait until I get home so we can get acquainted. Her name is Chemo Dasatinib. Also, known as Sprycel.

It wasn't too long after this that I realized, I didn't need any poisonous girlfriend, so I gave her a sex change and a new name. Obi-Wan Kenobi because he's my only hope. And he's wise and will teach me to live and take care of myself.

(Did you know there is a Wookiepedia? Check it out if you are a Star Wars fan. Is there anybody who doesn't like Star Wars. I wonder.)

The doorbell rang. When I got to the door no one was there except a big box, bigger than I expected and surprisingly light weight considering the power the contents will have on my life. But, of course, how much would I have expected 30 pills to weigh?

Arrows pointing upward on all four sides

UP
RUSH!
PERISHABLE
INSULATED
UP

THE MELTING OF THE COLD PACK CAN BE EXPECTED DURING TRANSIT OF YOUR ORDER

PRODUCT CONTAINS NO CHLORO FLUORO CARBONS

ProPak
Corrugated Recycles

The Price of Guilt

I went to the oncologist on Wednesday. The results of the bone marrow biopsy verified everything that was already known. I have CML. Dr. Wong has ordered a prescription of Dasatinib. If there are no adverse side effects I will possibly take this chemo type drug for the rest of my life. I suspect some newer drug will come down the pipeline. Who knows? Perhaps a cure. Wouldn't that be awesome?

I recieved a phone call the next day and was told that my prescription had been approved by my Medicare and Medi-Cal insurances, full coverage, no copay. That's wonderful! But, I can't help but feel a bit guilty. How many people who are not covered by my type of insurance can afford this drug? I've looked around the internet to discover what the price would normally be. The answer is anywhere from $3,000 to $4,000 a month for the dosage I will be taking. That's $36,000 a year. I'm 66 years old. If I live another ten years that's three hundred sixty thousand dollars, providing the price doesn't go up. If I live as long as my mother that would be seven hundred fifty six thousand. That's also where my "guilt" chokes me. That's a lot of money. I am worth it, I believe. But, this is money out of taxpayers pockets, and this bothers me.

Okay, so I'll just have to get over it, stop thinking about it. That's it! I've got more realistic priorities to consider

Dasatinib is the generic name for Sprycel.

SPRYCEL may cause serious side effects, including:

- low Blood Cell Counts: SPRYCEL may cause
- low red blood cell counts (anemia),
- low white blood cell counts (neutropenia),
- low platelet counts (thrombocytopenia).

Bleeding: SPRYCEL® (dasatinib) may cause severe bleeding that can lead to death.

Call your healthcare provider right away if you have:
- unusual bleeding or bruising of your skin
- bright red or dark, tar-like stools
- a decrease in your level of consciousness, headache, or change in speech

Your body may hold too much fluid. In severe cases, fluid may build up in the lining of your lungs, the sac around your heart, or your stomach cavity.

Call your healthcare provider right away if you get any of these symptoms during treatment with SPRYCEL:
- swelling all over your body
- weight gain
- shortness of breath and cough

Heart problems: SPRYCEL may cause an abnormal heart rate, heart problems, or a heart attack that can lead to death.

Your healthcare provider will monitor the potassium and magnesium levels in your blood, and your heart function.

To look on the bright side, I hope I will not have these problems. There are lesser ones to deal with much more tolerable.

Now that my prescription has been approved, I cannot take it to my local pharmacy. I really like that place. It is very small and I get very good service. I feel like the pharmacist is a friend. So, I shall recieve my Dasatinib (Sprycel) shipped to me every month from CVS. I hope it will be personable service. If not, well, that's okay. I'm expecting my delivery sometime soon, as soon as tomorrow, I am told.

~~~~~~~~~~~~~~~~~~~~~~~~~~~
Photo is of myself and Katsumi taken 2004 near Big Sur

What is Chronic Myelogenous Leukemia?

Chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, is a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood.

 

Both names mean the same thing, but my doctor is calling it Chronic Myelogenous Leukemia, so I'm going to go along with him on this.

It is usually associated with a chromosome abnormality called the Philadelphia chromosome. In CML, leukemia cells tend to build up in the body over time, but in many cases people don't have any symptoms for at least a few years. 

I can look back on old blood tests from two years ago that indicated something was going haywire with my blood cells. It was thought I had infections at the time. I don't blame my doctors It is a common diagnosis for those types of blood results. At that time I did not have the increase in myelocytes that would have made the diagnosis more obvious. (more on myelocytes later) NOTE: Get copies of all your test results! You are legally entitled to them.

In time, the cells can also invade other parts of the body, including the spleen. CML can also change into a fast-growing acute leukemia that invades almost any organ in the body.

I do not have an enlarged spleen. That has been proven by CT scans. My CML has been diagnosed early, so it is not expected that I will have any aggressiveness coming up any time soon. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Photo is of myself in 2004, taken in Monterey, California. I remember the wind was blowing off from the ocean. It was a cold sunny day.

~~~~~~~~~~~~~~~~~~~~~~~~~~

This is part of an article from Scientific News as published in ACOR. I cannot find the original reference.

Haunted Awakener

I find myself within each day swinging from blessed ignorance (my brain has turned itself off), to horror.

I puzzled over the dilemma of being controlled by my emotional instability and how I could live better with the situation.

There's always a choice, I say. Well, maybe not always, but an attempt must be made in order to try to get through things instead of falling through the cracks and losing it entirely. Been there done that too many times already. Psych meds help, but I also have to help myself. I think it's called Rational Emotive Therapy. It's quite helpful.

I had a friend once who had a series of bad dreams that haunted her daily life. She tried everything to stop the problem, from counseling to sleeping pills. But, it wasn't until she realized that the dreams bothered her most after indulging in one of her favorite activities. Or should I say, inactivity. She enjoyed watching horror movies.

Sometimes we don't put two and two together until long after we have failed the math test.

I realize my subconcious is wrangling with the Leukemia diagnosis, of course. My concious mind wants facts, facts, facts. I keep researching, learning what all the medical terminology definitions are, studying like a pre-med student for the final exams. I want satisfaction for my curiosity. I must know the adversary!

Still, the adversary is frightening. I can't turn my back on it. I research late in the evening after I have done all the rest of my daily business.

I sleep okay. It's just waking up to the underlying emotions that gets me down. One might say, "Stop researching". That would make me so anxious, I would be in worse emotional condition.

I have come to the conclusion (Drum Roll) that researching Leukemia information late at night is what's causing the emotional wake up periods.

DUH!

~~~~~~~~~~~~~~~~~~~~

Photo Art, "Haunted Dreamer" by me, Elizabeth Munroz

Leukemia Vaccine?

I took my cat, Ninja, to the vet. He needs a bath, and they do it for a reasonable price. But before they will bathe him, all his vaccinations need to be up to date. This goes for any place I would take him to be bathed. It's not just the vet's office trying to make money off me. They want people to keep their inoculations up to date.

I admit I have been negligent.

I asked what vaccines he needed. There were two. I have already forgotten one of them. The other one stuck in my mind. I knew before that this existed. But, it brings up a real question.

Why do they have a vaccine for Feline Leukemia and not one for human leukemia?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Something I am learning about CML


Chronic myelogenous leukemia has 3 phases.

As the amount of blast cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may result in infections, anemia, and easy bleeding, as well as bone pain and pain or a feeling of fullness below the ribs on the left side. The number of blast cells in the blood and bone marrow and the severity of symptoms determine the phase of the disease.

Chronic phase

In chronic phase CML, fewer than 10% of the cells in the blood and bone marrow are blast cells.

Accelerated phase

In accelerated phase CML, 10% to 19% of the cells in the blood and bone marrow are blast cells.

Blastic phase

In blastic phase CML, 20% or more of the cells in the blood or bone marrow are blast cells. When tiredness, fever, and an enlarged spleen occur during the blastic phase, it is called blast crisis.

Above information is from http://www.cancer.gov

Bone Marrow Biopsy Procedure

I've been so occupied with further testing and just ordinary medical appointments that I haven't had a moment to relax. Well, and... taking care of the Chondrosarcoma group, and hanging out at Facebook, and playing Words With Friends for a little escapism ( WWF is like Scrabble) and attending a writing class. I am also writing my autobiography-memoirs. I intend to publish. I'm about 2/3 of the way through it. I intend to publish.

Years ago when I had CS, cancer was not something discussed with others. in fact it was a shameful secret. I went through the surgeries and healing process without friends even knowing what was going on until the later years of recurrences. Lost a lot of friends that way. People like calls returned and want to go hang out. It was a lonely journey. It feels so good to know I wont be alone on this. My friends are being very supportive.

Last week on the 28th, I had a bone marrow aspiration and biopsy. Kats held my hand, but really didn't need to. It was a really easy and painless procedure. Better than having a tooth extracted. Truly, when the doctor first pressed on me before injecting the numbing stuff, It's what hurt the most, since I have Fibromyalgia. I know there is a lot of talk that it's terrible, but that was not my experience. That is not to say someone else might have a different experience. My behind was numbed out with novacaine. We waited about ten minutes for it to take affect. The doctor inserted (twisted?) a needle into the iliac bone until he reached the bone marrow and aspirated some fluid. Then he used a sort of thick needle to pull out a tiny piece of bone so that it can be sent to a pathologist to further identify what's going on with my Leukemia. I asked to see it, no thicker than a piece of spaghetti and maybe a quarter inch long. I should hear some results by next Friday. The rest will trickle in after that.

Everything points to it being the chronic kind of Leukemia. But I have a million questions. What I'm reading there seem to be different degrees and different genetic aspects regarding staging and so on. With modern treatment, from what my doctor said, my chemo will be in pill form. I will have to take it the rest of my life. As time goes by there will be newer better medication and who knows? possibly a cure. I suspect I will be about 90 by that time. ;-)

I have joined an online CML support group. From reading people's updates, I'm finding that most all do well with their similar chemo.  So, I feel hopeful that my future is assured, as long as I'm not walking down the center divider of a busy freeway and a UFO lands on me. Ha Ha! I know... My sense of humor is warped!

Going over my old medical records (blood tests) and based upon symptoms I've had crop up, it looks like this started manifesting about two years ago. The most annoying symptom is night sweats. Other than sleeping in a vat of ice, I don't know what else to do.

The pictures were taken by Kats in November 1998 when we went to Lake Tahoe.

Bone Marrow Biopsy

Off to have the biopsy today. I'm not sure about why it is necessary, as they already have blood results. I will have to study up on this. 

I was diagnosed with CML last Tuesday as previously mentioned. The Bone Marrow Biopsy is in a couple hours from now without anesthesia. 

When I mentioned this to facebook friends I got a two to one "vote" against it. Four people said don't do it without anesthesia because they had a friend who said so. Two said it was not that bad because that is was their experience through with their ALL (a different type of Leukemia than I have, more severe). 

I got another opinion from a young man in my autobiography writing class who has seven years survival with ALL. He said his first bone marrow biopsy was done without anesthetic when he was a teen and "that it must have been okay" because he doesn't even remember it. Later ones he had were with anesthetic. He doesn't know why.

So, here I go. Hope I won't be sorry that I'm doing this without anesthetic.

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Picture was taken in 1998 by Kats when we went to Lake Tahoe. 

This was in desert area on the way to Reno, Nevada, I believe

Leukemia Diagnosis Today

After a great deal of tests and results, I was diagnosed with Leukemia today. There is no doubt about it. No if's, and's or but's. The kind I have is called Chronic Myelogenous Leukemia. I was diagnosed through Palo Alto Medical Foundation Oncologist and Stanford University Pathologists. They know what they are doing. 

Right now I am in the early stages. So, I am not too sick. Just bone pain and tiredness, low stamina and tummy problems, which is common for me considering my history. It's just a lot more, plus NIGHT SWEATS!!!

The chemotherapy is going to be in pill form, so I won;t have to be hospitalized. I will take it everyday for the rest of my life, or until my body rejects it. When or IF that happens I will requrie a bone marrow transplant. The ideal would be if it would be derived from my brothers or sister, if we match. That will have to be determined later. Maybe years later. Like I said. this kind of cancer is chronic. It is my understanding that it can be well controlled for some time.

I am not freaking out about it. The doctor seemed to be a little confused that I didn't cry or act disturbed or angry. I really felt little. It just seems like one more thing...  After all, I have lived 43 years beyond the diagnosis of my previous cancer, Chondrosarcoma, (which is not related to CML in any way whatsoever). So all those years have been a gift and this somehow just seems like a fly on the window screen. 

But, I do feel profoundly sad.

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Picture was taken by Kats at Rio Del Mar Beach, Aptos, California. This is right near the spot where we fell in love.